How do you talk about death with a kid who's dying?

Family Photo

Family Photo

Barbara Brotman

Death is universal. Talking about it is hard, and reading about it can be, but at the same time, we are drawn to the subject because we all face it, whether our own or our family members. And how much medical care we get when we are dying is of great interest, because many people dread dying hooked up to machines. Or having to make a decision about whether to "pull the plug" on a loved one.

When an end-of-life-care organization met in Chicago recently, two researchers presented their research on a particularly uncomfortable subject; How to talk to seriously ill teenagers about their possible death, and what kind of care they would or would not want.

I talked to the researchers, but wanted to talk to families that have faced this talk. So I contacted a number of hospices and Lurie Children's Hospital, which kindly put me in touch with several families. Deb Fuller, of Woodstock, spoke eloquently, to me and to Tribune photographer Keri Wiginton on video, of how she wished she had broached the subject earlier in her daughter, Hope's, illness. Annmarie Campus spoke of her limited interactions on the subject with her son, 13-year-old Jeremy; and when Tribune photographer Terrence Antonio James and I went to their home, Jeremy recounted his battle against cancer and told us that his choice was not to talk about the possibility that he might not recover.

It was powerfully moving to talk to these families that have grappled with this unimaginable situation, but it illustrated what the researchers found (though they spoke with children who weren't as ill): That young people, who sometimes avoid the subject to protect their parents, should be offered the opportunity to talk about what might be ahead for them.

Hopefully, these stories honor people facing these situations. And it is important to tell them; mortality is a fundamental fact -perhaps the most fundamental fact - of human existence.